CFS Patients War Against Controversial U.S. Health Research Plan

Millions of Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS) patients all over the world are closing ranks in an attempt to stop the U.S. government’s initiative for a controversial health research plan that will see the Institute of Medicine (IOM) looking for ways to diagnose and redefine their illnesses.

Thousands of people already affected by these diseases have signed an Avaaz petition to try to force the U.S. Department of Health & Human Services (HHS) to cancel its contract with the IOM to “develop diagnostic criteria” for ME/CFS. An attorney who was disabled by ME eight years ago (see photo above) has threatened to fight in federal court and “the court of public opinion,” and hundreds of others are preparing to wage war against the plan in any way they can.

The term ME/CFS refers to one of the most controversial “diseases” on the planet. In the United States alone, it is accepted that at least one million people currently suffer from its symptoms. There is no known cure and there is still a body of study that labels the condition psychological, if not psychiatric. There is also dispute about whether ME and CFS are the same condition, or whether they should be diagnosed as separate illnesses. The people suffering from this disease, however, have a different argument.

Patricia Carter, a former lawyer who has had ME for 27 years, and who says her life has been “destroyed” by it, originated the petition to cancel the contract between the HHS and IOM. Carter is also administrator of an internet forum, mecfsforums, for people suffering with ME and CFS, which currently has more than 6,850 members. What she and the forum’s members want is for the HHS to adopt a set of criteria already used in Canada, called the Canadian Consensus Criteria (CCC), as both the “research and clinical case definition” for ME and CFS.

“For decades, sufferers have been left with no real biomedical research and no effective treatments,” Carter told Guardian Liberty Voice. “Now the HHS is attempting to prolong this time by contracting with the IOM to redefine the illness.” She, like thousands of other MS and CFS patients, believe the research by the CCC should take precedence and be used....

I really do NOT understand who or what entity is so committed to silencing the truth around this illness.
This has gone far beyond "conspiracy thinking," this is some kind of insane agenda! Who ARE these people!?!

they have spun a huge narrative, they do not want the public to know about the reality or even just possibility of all the damage they have done, of paying for the sick, they'd rather a billion children died screaming than pay one penny of tax.
it's a huge web of nepotistic, stupid, banal lies and evil.

marketing begat PR, begat schemes and plots to keep wars "acceptable", and when wars required total effort, the government took the reigns of society like no tyrant had EVER achieved before, and in democracies at that!
And lo! the scum liked this, and exploited it, and soon the Pubic were clambering to build more NUKES! kill more babies for centuries with strontium 90, but the risks were swept aside: dirty hippie commie scum!
Citizens must worship the bomb, the holy phallus bomb of VOTE WINNING!
Fear the Russian/American/Moslem, he will eat you in your bed like the Jew or vampire of old!!
Fear! obey!! Ignore any who say there are dangers! they are defeatist traitors!

sigh...mad, yes, but that's exactly how it is.
it's spun into a mightmare that has consumed them just as much us.
they have a tiger, not by the tail, but wrapped around their eyes and souls.

Recently, Ian Duncan Smith, nicknamed "Himmler" by many now here, in charge of our pensions and welfare system, said that basically ending welfare dependency was a crusade like fighting against slavery!
and he BELIEVES this, he claimed ot have visited a Glasgow slum, and "Understood what was needed"
the son of a bitch was born with the proverbial silver spoon in his mouth, *I* know what it's like, I BLOODY KNOW not that scumbag, who was so useless he bought a commission in the army and his COs refused ot use him as anything other than a bloody secretary he was that useless.
"Welfare dependency" from SCUM who live in mansions and castles?!?!!!

as I've noted before, Andrei Sakharov, genius who created Russian nuke designs, quit cause he realized his super-clean megabomb would still kill 500,000 people, mostly kids from fallout for decades and centuries, that was ONE bomb and though enormous it was extremely "clean".
Gawd damn morons in UK, Russia, France and USA detonated about 800 of the horrors in atmosphere or just below ocean surface...many incredibly "dirty"
but that has nothing to do with cancer today, nope!

so if US and UK troops get poisoned by nerve gas *WE* gave to Saddam...that has ot be covered up

if they were poisoned by that same type of chemicals used to kill insects, that has to be covered up because the agro-chem companies are favourite retirement spots for our politicians: lovely scheme, you make sure some bills pass through, and then, you show up once or four times a year at company meetings to show face, get drunk or snort coke etc, get paid £50,000 to £200,000 a year, wonderful eh?

Vaccines..even worse, $50 billion a year industry that is highly secretive (contracts that our supposedly transparent democratic governments pay for our benefit are...secret)
AND government picks up the *insurance tab*, to anyone else that'd be conflict of interest, since government has ot make sure folk don't sue for billions or trillions due to be messed to hell by being blasted by dozens of vaccinations.

and so on and so on
I couldn't make this up in a made scifi/conspiracy/Kafka novel if I tried!

sorry folks....but that's how it is, drives me insane. they are going to kill most of the human race.
instead of fixing this, they cover it up. "Gaslighting" the world to death
it's MASSIVE!
please read up on how they denied, delayed and made sure most of the asbestos, nuke veterans, coal miners etc folk here in UK mostly died off before getting any compensation, and then lawyers got 60% of it!

the Elite should be forced to clean up ALL the chemical weapons, cluster bomb sites, minefields, depleted uranium strikes, etc by hand. currently I'm against testing ME/FM etc on them but hey...it's tempting

*INSANITY* and sanity, no such thing, they are merely cultural labels.
In Nazi Germany, you were insane, by their leaderships cultural standard, if you were kind to a Jew, gypsy, disabled gay etc.
To be truly sane in OUR culture, to think, to care etc, is to be insane....

Bread & circuses, woo hoo ! look at Miley cyrus's ass!
Reality TV is what loyal, tranqulized citizens should talk about....and so on and so on: distraction and crap

they shut a beach down near Edinburgh because they scrapped a lot of World War2 aircraft, which used radium for the instrument dials, maybe 50 aircraft? that is deadly, they shut the beach down permanently
My Dad worked in the factory which MADE those dials by the THOUSANDS
less than a mile from where I sit
when the factory shut down, they demolished it, the walls GLOWED
During operation the poor ignorant sons of bitches who worked there, not knowing, burned the radium waste out the back in a pit. Bosses didn't care they live out in the nice country, far form us peon scum in house schemes.
A primary school and a housing scheme were 150 yards from it....
The International Atomic Energy Agency said it was SAFE
there is NO SAFE LIMIT FOR RADIUM IT IS THAT DEADLY!
they BURNED IT, meaning it wafted over the entire town, add in the steelworks (2nd biggest in Europe), munitions factories etc...

all I can see is miscarriages, malformed children, kids with leukaemia, people I have known suffering and dying....

we are one part of this madness.There is nothing in this world, that is worth the tears of one child.

Apparently she wrote this article after Wildaisy and others brought to her attention some of the misinformation she had spread with her first article. I commend her for wanting to understand and communicate the truth.

Apparently she wrote this article after Wildaisy and others brought to her attention some of the misinformation she had spread with her first article. I commend her for wanting to understand and communicate the truth.

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for some reason I initially thought it was another similar article (brainfog, sorry), but I hadn't followed the link because of the message earlier that it was currently compromised. Seems ok now except for maybe a pop-up ad at the bottom (for cereal, it's just that it's a popup).

4.1
Q: What is XSS and why should I care?
A: XSS stands for Cross site scripting, a web application vulnerability which allows the attacker to inject malicious code from a certain site into a different site, and can be used by an attacker to "impersonate" a different user or to steal valuable information. This kind of vulnerability has clear implications for NoScript users, because if a whitelisted site is vulnerable to a XSS attack, the attacker can actually run JavaScript code injecting it into the vulnerable site and thus bypassing the whitelist. That's why NoScript features unique and very effective Anti-XSS protection functionality, which prevents untrusted sites from injecting JavaScript code into a trusted web page via reflective XSS and makes NoScript's whitelist bullet-proof.

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I had a look at the error log. I don't really understand it all but this is what it seems like to me ...

First there was some of what appears to be CSS/Javascript errors, maybe because I block some of that by default. Some of the CSS requests seemed to be specific to OSX/Safari related, which I do not use.

I have no opinion on whether it was "sabotage" or just a common error, or problematic advertising script, or just non-ME/CFS related malicious activity. What happened with the NPR and Buzzfeed thing, someone reported Tuller's article as abusive?

Millions of Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS) patients all over the world are closing ranks in an attempt to stop the U.S. government’s initiative for a controversial health research plan that will see the Institute of Medicine (IOM) looking for ways to diagnose and redefine their illnesses.

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Tell me, other than the claim that millions want to see the contract stopped, what's in it for those with 'CFS' when the ones who want to stop this contract will effectively dump anyone not with their preferred 'ME' out in the cold?

What she and the forum’s members want is for the HHS to adopt a set of criteria already used in Canada, called the Canadian Consensus Criteria (CCC), as both the “research and clinical case definition” for ME and CFS.

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I don't believe that is what those who wish the contract stopped want. They want CCC for Myalgic Encephalomyelitis and not for CFS as well.

“For decades, sufferers have been left with no real biomedical research and no effective treatments,” Carter told Guardian Liberty Voice. “Now the HHS is attempting to prolong this time by contracting with the IOM to redefine the illness.” She, like thousands of other MS and CFS patients, believe the research by the CCC should take precedence and be used.

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Interesting to note that most research now, if not all, includes the CCC along with Fukuda, and we have been seeing much progress I would argue in recent years especially with some more significant studies coming on stream. There has been a much wider acceptance of e.g. immune dysfunction, and cognitive problems, etc. The IOM are also charged only to recommend a definition for clinical diagnosis and not research.

Instead, they did a crazy thing and decided to create a committee of “non-experts.”

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So the, what, 7 ME experts on the committee are to be regarded now as 'non-experts'? And how many serving in this capacity actually signed the so-called 'experts letter' before the IOM was announced, I forget, but I think Klimas was one and Bateman the other? Are they what you would want to call 'non-experts' as well? Crazy.

Finally, Burmeister said, “hundreds of thousands of patients’ lives were ruined or ended by a federal consensus definition in 1994.” This had resulted in patients who were “furious and alienated” by “state-sponsored bullying.”

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Seriously now, is there any guarantee that those same hundreds of thousands of patients lives would have been any better with a clinical definition based on or exactly the same as CCC 2003? How could anyone possibly know?

There seems to be an agreement that definitions should be empirically tested, and even the NICE Guideline was not subject to this. It would make more sense to me to push for such testing on existing case definitions, enabling each to be compared.

Personally, I don't think there is any chance of stopping the contract. I do expect an improvement on Fukuda, but let's not kid ourselves, we are messing about with ill-defined symptoms, and until the science can better point the way - what difference will a new clinical definition make?

Will it really make 'ME' the much desired 'organic disease'? Will it really quosh once and for all, all the alleged psychiatric claims that are made and prevent people with 'ME' being locked up in psychiatric hospitals? Will it actually mean a treatment for the disease or even the symptoms that effectively improves quality of life? Will it mean that patients cannot judge for themselves whether or not they have 'ME' before even seeing a doctor?

Before IOM was announced CCC and the experts letter made most sense to me. Now the process in underway, personally I can't wait to see what they make of all the attempts over the years to mess around with the same basic core symptoms. How many bloody definitions does my illness need for heaven's sake? Someone needs to take control and bring in something to replace them all.

FYI when I click the More link I get an attack page warning.
same for when I click the link via Wildaisy's post.

Is this more of the same BS we were seeing with the NPR article and the Buzzfeed thing?

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Penny Swift from mecfsforums:
Thanks for the kind comments people. I will continue to write about this as long as there are newsy or relevant topics to write about... and I can see there are a lot.Regarding the malware attack on the GLV website; it has been tracked down to the ad servers - and GLV was used as an intermediary. I understand that the site is now clear and we will continue to operate as normal. So please visit the site when you get a chance and leave comments.
I'll be writing at least two more articles about CFS and related issues during this coming week.

Regarding what happens to those with 'CFS' "when the ones who want to stop this contract will effectively dump anyone not with their preferred ME out in the cold". This is from the CCC:

CCC said:

If the patient has prolonged fatigue but does not meet the criteria for ME/CFS, classify the diagnosis as idiopathic chronic fatigue.

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This is from the ICC Primer:

ICC-Primer said:

Patients diagnosed using broader or other criteria for CFS or its hybrids (Oxford, Reeves, London, Fukuda, CCC, etc.) should be reassessed with the ICC. Those who fulfill the criteria have ME; those who do not would remain in the more encompassing CFS classification.

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ICC-Primer said:

Not only is it common sense to extricate ME patients from the assortment of conditions assembled under the CFS umbrella, it is compliant with the WHO classification rule that a disease cannot be classified under more than one rubric. The panel is not dismissing the broad components of fatiguing illnesses, but rather the ICC are a refinement of patient stratification. As other identifiable patient sets are identified and supported by research, they would then be removed from the broad CFS/CF category.

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I wouldn't want people left out in the cold, hence both a broad and narrow approach is needed, but if ME and CFS really are distinct conditions and I meet criteria for ME, naturally I would be more concerned about ME than what happens to CFS. Those with ME have been left out in the cold for over 25 years partly because of the CFS construct. CF/CFS research would still go on, and ME research could begin on a different patient group.

Regarding CCC and research, I am not sure if most research is now using the CCC. I would be surprised and mildly relieved if that was the case. Are immune dysfunction and cognitive problems really gaining wider acceptance? I don't think clinical and research criteria should be developed separately without any consideration for the other.

Regarding experts, who decides who is one? The word "expert" gets thrown around too much. I also cannot get past the feeling that the world of CFS is still just a back water where the caliber of the average researcher or clinician is low compared to mainstream fields and being an expert in this field is sort of like being an expert in astrology etc where there are complicated belief systems based on personal experience more than solid research evidence.

There seems to be numerous CFS experts with their own pet theory and range of supplements or treatments they want you to try. I think I would rather continue to suffer alone untreated than ever see another CFS expert before there is good scientific evidence to do so. And just because someone publishes an interesting biomedical paper or two on a CDC 1994 cohort does not mean they are an expert in ME. Not saying there are no good experts though, I just don't know how to judge.

You are correct that there is no guarantee "hundreds of thousands of patients lives" would have been any better with a clinical definition based on or exactly the same as the CCC, and nor would it necessarily quash the psychobabble. I think it would still be an improvement, as the CCC was based on a large study into symptoms, as well as the experience of clinicians. I am glad the issue of definition has become such a heated issue. It has only gotten this bad in the first place because like a festering wound it has been ignored or relegated and starved of funding for too long.

I doubt the contract is going to be stopped, but ongoing pressure and criticism may still influence its outcome and application. There are already too many definitions. I agree that empirically testing all the definitions should be a priority, as well as refining the winner. You said someone needs to take control and bring in something to replace them all. No one seems to have that power. And if they did, what if they just adopted something poor like Oxford for or NICE?

I have no opinion on whether it was "sabotage" or just a common error, or problematic advertising script, or just non-ME/CFS related malicious activity. What happened with the NPR and Buzzfeed thing, someone reported Tuller's article as abusive?

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@biophile, when I went to GLV I was redirected to an alert page stating the site was an "attack site". (If you go to Wildaisy'post she posted a screen shot.) I had an innate sense this was untrue, as had others at the other forum, so I visited the page without issue, and ran antivirus software with no threats being detected.

In the wake of the Tuller article, Jeanette Burmeister's blog was suddenly giving people malware warnings as well. Similarly, someone flagged David Tuller's article as abusive, so for a while no one could forward it via FB. With NPR, comments were being taken down (normal measured ones) that were of the patient's perspective. (There is a thread here somewhere with the thoughtful comments that were removed, although some were not.) Wildaisy reports that MECFS forums was also flagged as hazardous during the Penney Swift article period.

I'm going to go out on a limb and say yes, someone is on a dogged campaign to interfere with the dissemination of information about this topic from the patients' perspective, and sabotaging sites is the way they are doing it.

I am reminded of the whole virus student's (and others) campaign to discredit Judy M. Whether this is political or personal, there is an individual or individuals who are getting kicks out of squelching the power of free speech on this subject, and they are keeping close watch on the media so they can jump right on it.

This is not conspiracy theorizing; this is the observation of reality as it unfolds in real time.

Well, when she does write again I hope she will correct the misstatement that the CCC is used in CANADA. It is used all over the world!

And I hope she will correct the misstatement that there is no biomedical research. There has been biomedical research available to anyone who is interested since the mid 80s. Peterson and Cheney found punctuate lesions, similar to those in MS, AIDS and Alzhiemers, in cfs patients way back then, using up-to-date MRI machines.

Japan and US experts have been using VO2Max scores and NK cells tests for diagnosis and research for at least 30 years. A few years ago it was found there are/were over 5000 biomedical research papers on the various biomedical aspects of this disease. There have been quite a few more since then.

The research is there! It's the politics that have kept us in purgatory.

It depends what is meant by research. When we find a potentially important biomarker, some new biomedical finding, what typically happens? Nothing. When we look for large rigorous epidemilogical studies, where are they? They don't exist. When we look for serious disease definition validation studies, where are they? Nowhere. When we look to why these things don't exist, what do we find? Abysmal funding.

The reason for the abysmal funding is largely political though, including medical politics. I know of a case where good research was turned down for funding, with on anonymous reviewer saying "CFS is psychiatric, there is no point in doing biomedical studies" or something similar ... this was from many years ago, I no longer recall the specifics. The politics also keeps researchers away. How many of our researchers have been intimidated or harassed for researching into this area, including by their own institutions?

Politics and ignorance are to blame, but our state of biomedical research is pitifully small compared to MS for example.

@Iquitos, perhaps you could gently let Penney know your excellent points in the comment section of her article or via email.
She appears to be very committed to getting this right, and very open to both learning, correcting herself, and helping the correct information flow.

I think we have a good friend and ally here, who would love to know where she can fine-tune. Susan Kreutzer has sent her a long and most excellent page of references for her research.